To crack the code of FSHD, patients are essential. Every breakthrough in FSHD has been made because patients and their family members got involved. We are hopeful that a treatment is within sight; your participation will move us closer to discovery.
FSH Muscular Dystrophy is highly variable, even among affected family members. Each person has their own unique journey with FSHD. The FSHD Society is here to educate and empower individuals to live their best lives, physically and mentally.
There is great power in community. Around the globe, individuals with FSHD are living proof of that. When we come together, each bringing our unique strengths to bear, we inspire each other to reach higher than we can when we go it alone.
Education: A Patient's Best Weapon for Change
FSHD University is your center for advanced education about the art and science of living with FSH muscular dystrophy. Our webinars and other resources are designed to empower individuals with FSHD to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide treasure troves of videos, articles, and resource lists, provided by the world's top experts, including many people living with FSHD. FSHD University is a place for you to gain knowledge, make friends, and find hope.
Latest Blog Posts
Tips and tricks for managing urinary incontinence Editor’s note: This is a summary of the May Women on Wellness Zoom meeting. The members met to discuss their concerns and solutions around toileting while traveling. Note, many of these solutions are applicable for men. Thank you to Ranae Beeker, RN, and the WOW members for this…
Using Artificial Intelligence to Analyze FSHD Data The FSHD Society announced that it is launching a collaboration involving the FSHD Clinical Trial Research Network (CTRN) and BullFrogAI, an innovator in artificial intelligence, to analyze the largest-yet natural history dataset collected…
Join Drs. Johanna Hamel, Kate Eichinger, and Natalie Katz to learn about the largest natural history ever done for FSH muscular dystrophy. People of all ages can participate, and children and teenagers are especially needed. Find out why this study is so important and why you and your affected family members' involvement will have a...